jesse_the_k: Perfectly circlular white brain-like fungus growing on oak tree (Default)
Kim Nielsen is a disability historian. Her one-volume A Disability History of the United States provides an overview of living with disability in these colonies from founding to 1990. What particularly interested me is how non-white-male bodies were defined as disabled, and then how the divisions changed.

On Worldcat in print, braille, and ebook

On her author blog, her essay "God’s Real Name: On Rescues, Ableism, and Unexpected Empathy" explores her reaction to a homeless man who blesses her.

begin quote
My own ableism, my own class squeamishness, and bigotry, my interpretation of his religiosity as distasteful insanity, had led me to dismiss the man. I had excluded him from our joint rescue plan--indeed, had understood him as something to be rescued from--and ignored his offer to gift me with help and rescue.
quote ends
jesse_the_k: Perfectly circlular white brain-like fungus growing on oak tree (Default)

The HIV Crisis In The Deaf Community

This excellent article highlights big troubles.

Just one story:

A gay Deaf man new to DC attempts to set up an interpreted appoint at a queer friendly clinic; after waiting for 45 minutes he's escorted to a room with a video relay interpreter:

begin quote

All I wanted to do was to set up an appointment at a later date with the doctor and a live ASL interpreter. That’s all I want.

She looked at the note, smiled, and wrote, “We don’t do that here. ASL interpreters are expensive. This is a cheaper alternative.”

I looked at the note, shook my head, “No.” I got the feeling that this was not going to be a “Deaf-friendly” nor “Deaf accessible” and got up and started to leave when she grabbed my arm. I looked at her quizzically with her writing furiously on the note. She wrote, “You do qualify for our services but you have to understand, we can’t afford it.”

I looked at her disappointedly and wrote: “I find it ironic that the HIV-positive community is knowledgeable with the ADA law and uses it to the betterment for the community and yet can’t provide for their own.”

quote ends
Some context: Since Washington DC is home to Gallaudet University, they have a very large and skilled interpreter workforce. Two videos with ASL, captions, and audio )
jesse_the_k: Rubik's Cube puzzle with all-white faces labelled in braille (Braille Rubik's Cube)
In conversation with yesterday's Mingus essay, here's Deaf-Blind poet John Lee Clark addressing forced separation because of deaf-blindness, which he calls distantism:

begin quote
Each form of social bigotry has its distinctive personality and its unique set of intertwining evils. excerpt and context )
jesse_the_k: Perfectly circlular white brain-like fungus growing on oak tree (Default)
Mia Mingus has written another short, powerful essay on interacting with nondisabled people. She examines how we are forced into intimate interactions because we are disabled.
a taste )

It's challenging to maintain my self-confidence while experiencing the assumption that my boundaries don't exist, or don't count. Self-compassion meditation helps some. Snarkiness helps some.
jesse_the_k: Well nourished white woman riding black Quantum 4400 powerchair off the right edge, chased by the word "powertool" (JK powertool)
Dave Hingsburger is as always, brilliant:
begin quote
No wonder people who are recently disabled have such a tough time with disability - not because of the reality of the disability, although that takes getting used to without a doubt, but because of the voices, voices, voices of people throwing pity and sorrow and sadness onto a situation. How do you dig yourself out of a tough situation if people keep dumping their own shit into the hole?

end quote

When I began using a wheelchair, I couldn't parse the intense attention of nondisabled people. I thought it was personal; that I was doing disability wrong.
jesse_the_k: Rodney gestures triumphantly (sga Rodney pwns again)
Thankfully I've had a good summer free of nondisabled people annoying me about my health. These folks provide insight and great comebacks.

Hank Green, one progenitor of the internet-based social movement, Don't Forget to be Awesome, has ulcerative colitis. Just like the rest of us with chronic illnesses, he's received years of unsolicited advice for better living without pain: more gluten, less gluten, fish oil, motor oil. In this captioned video, he identifies how and why those intrusive suggestions make him feel like his illness is his own fault.
embedded video here )

From [ profile] genericlottery, a comic strip exposing a common workplace issue: description here )
View original at

From [ profile] disabilityhealth
In carefully set type these words to live by:
"I don't think you look disabled"
I don't think you look qualified to make that assessment.

View original at
jesse_the_k: sign reads "torture chamber unsuitable for wheelchair users" (even more access fail)
ETA: I wrote this for May 1st, Blogging Against Disablism Day. many more posts

Nineteen ninety-three: I got my first powerchair, my city began a growth spurt, and the ADA design guidelines had just been published. This should have meant smooth rolling: many new accessible buildings!
Yet many accessible locations are destroyed by deliberate barriers )

This is the continual battle against the normate space invaders. This is why accessible design and construction isn't enough.

If you think this barrier wasn't really created on purpose, that it's just the thoughtlessness of the ill-informed, I know that's not the case. I've visited this particular shop to inform them they've recreated barriers unnecessarily, and asked them to stop destroying the built-in accessibility. Their response is Oh, don't worry, we'll be happy to help if you just ask.

Nondisabled people may wonder, so what's so hard about asking? Great effort has been made to create accessible environments. Why should this thoughtless disablism require us to ask permission over and over? We are here; we are the public, as Dave Hingsburger put it so eloquently. When nondisabled people recolonize our spaces, we must regroup, react, and respond.

jesse_the_k: Swim fins which are also high heels. (swimmer deluxe)
Dave Hingsburger speaks to my experience as a wheelchair user who can also walk. He relates being called names by a neighbor who finds him walking the hall:
How Dave Handled It )from Rolling Around In My Head: Wall Walker

I've only encountered direct confrontation a few times. But even after 23 years using a powerchair, I still hear a vile inner voice, saying "you're just not trying hard enough, if you were in better shape you'd use your rolling walker everywhere." My experience )
jesse_the_k: sign reads "torture chamber unsuitable for wheelchair users" (even more access fail)
[Thanks to Carly Findlay, I've untangled who said what from yesterday's post; here's the revised version.)

"The Mighty" is a site funded by a US TV network executive. Real money is available to make an online magazine whose stated mission is Real People. Real Stories. We face disability, disease and mental illness together.

Mid-December, they published a mother's story about "Meltdown Bingo," where she described how her autistic son melts down. For a long time disabled writers have spoken up about the parental focus of the site. The "Bingo" article foregrounded the mom while invading the son's privacy. After a Twitter storm
The Mighty pulled the story
and invited disabled writers to participate. But The Mighty won't pay for prose, and the editors have changed submitted copy to swerve focus more to parents. Among the many angered by The Mighty, two Australian bloggers invested heavily in educating its editors. They joined the Mighty's private Facebook group for contributors and diplomatically discussed how previous stories were ableist, and how to improve. The Mighty's reaction was rapid and hostile. They banned the new writers from the Facebook group.
Refusing to Listen )
Phone call with Mighty staff has no impact )
jesse_the_k: Callum Keith Rennie shouts "Fuck no!"  (Fuck no sez CKR!)
ETA: my original post made a mess of quote attribution. Thanks to Carly Findlay for setting me right. Please see the next post:
for a revision.
jesse_the_k: Well nourished white woman riding black Quantum 4400 powerchair off the right edge, chased by the word "powertool" (JK powertool)
Starbucks in OKC built to ADA standards but mgmt makes #accessfail with furniture placement & storage choices. The "extra room" on handle side of a door? Wheelchair users need that space to reach the handle. You create #accessfail you put news racks, signboards or flower pots there!

More #accessfail when you store chairs & boxes in the wide hall to toilet or cabinets inside. As those of us who use wheelchairs daily learn, our travel path is still invisible to non-W/C users & still blocked #accessfail. You may think at least W/C user needs are recognized but not reliably.

When I point this out owner usually offers workaround "if I just ask for help." But that's why ADA design is so specific & roomy): to permit W/C users to move through the world unmarked, as smoothly as "typicals."

Even when a space is built to ADA minimum standards, people can recreate barriers. "My space" that I need to move naturally is readily colonized by those of us who see it as "extra room."

ETA: first 3 graphs are a Twitter repost, which got zero response. I am prob doing Twitter wrong.

Limited net connection so PLEAE sig boost wide & far
limited net access, please SIG BOOST
jesse_the_k: Callum Keith Rennie shouts "Fuck no!"  (Fuck no sez CKR!)
Barbara Dawson is dead. Her life was deemed not that important, because she was sick, black, female, and fat. (CW: lots of anti-fat crap crawls into this story's discussion, including "blood clot caused by obesity.")

click for horrible details )
jesse_the_k: Callum Keith Rennie shouts "Fuck no!"  (Fuck no sez CKR!)
The ongoing protests of police violence against African-Americans is making this systematic horror more visible.

Police violence is all too common when the "suspect" (i.e., human being under the gun) refuses to answer and/or obey police orders. Many impairments make it difficult or impossible to perceive or respond to police orders, in this case, ordering a quadriplegic to stand up.

Brutal behavior without death )

The Hayes lawsuit

A mainstream media report from the (Delaware) News Journal
jesse_the_k: Zoe from Firefly looks fierce with her sawed-off shotgun (Zoe's Gun)
AV Club writer Gwen Ihnat's excellent article describes her own experience as someone who's visually different thanks to vitiligo. For a long time, the white spots on her dark skin drew ridiculous questions from adults, as well as suggestions she not have children since they might also have this auto-immune disorder. But when she saw American's Top Model contestant Chantelle Winnie, who also has vitiligo, all up in her tv, it had a strong impact on what vitiligo meant.
begin quote
Why shouldn’t I get a manicure, even if it will draw attention to my multi-colored (not discolored) hands? Why should I try to cover myself with bad makeup when people with other unusual physicalities don’t have that option? What if rocking my vitiligo would help my children tackle any future challenges better than “fixing” it could?
end quote

The Article:

The TV Show:
jesse_the_k: Ultra modern white fabric interlaced to create strong weave (interdependence) is still reliably useful. The most recent advice responds to someone who's been treated for ADHD as an adult, and is getting skeptical, disbelieving responses from someone she thought was a good friend.:
begin quote When disclosing to someone who is generally a positive force in my life, I personally have found it helpful to translate initial “But I wouldn’t have guessed that you have _________” or “You don’t seem like someone with _________” or “You are much too young/smart/pretty/good at things to be _____________” reactions as:

“I am trying to hard to reconcile my mostly positive impression of you with the highly negative, stigmatized (perhaps scary) perception I have of people with __________. Since I am trying to resolve this cognitive dissonance in your favor, I’m going with wishful thinking and denial.”

Yep, many people react as if denying the possibility that your brain could work differently from other people’s is a compliment to you. Because that’s how scary/negative/skewed/narrow/ableist their imagination is about people who have (whatever you have).

Then you get the people who are immediate experts on your condition because of a thing they read one time, the people who want to immediately fix everything, the people who wring their hands and want you to comfort them about the issue that you are having, the diet and healthy lifestyle police who want to figure out how getting this was all your fault for not doing everything “correctly,” the blowhard who wants everyone to be so tough they don’t need medication…a rogues’ gallery of helpiness.

Once I can parse/translate their reaction as being about them and not really being about me at all, it doesn’t feel better, but it reminds me that I’m not the one making it weird by seeking health care for a health thing. quote ends

CA goes on to provide twenty-four ways to handle intrusive, boundary-pushing, stigma-painting inquiries. They'd work equally well for friends and family, and make very educational and gratifying reading.
jesse_the_k: Alan Cummings, all glammed up in blue eyeshadow and filmy red dress vamps in lime green room under the words "drama quee (Alan the drama queen)
Kim Stanley Robinson: 2312
available in print and ebook; 6/10 stars
Excerpt here thanks to publisher
4500 words re pushing through the last 300 pages )
Thanks to Luzula who said she was interested in my reaction. It's much easier to write to a known reader.
jesse_the_k: Callum Keith Rennie shouts "Fuck no!"  (Fuck no sez CKR!)
(cross-posted to [community profile] access_fandom)

I'm not going to provide a link, for reasons that will become clear.

That announcement pushed a whole row of my Assistive Technology Geek buttons, and I gotta rant. I'll use the LEGO braille printer "BRAIGO" to illustrate why I get so hot under the collar when I see this shit. (My cred: I've hung out with people who use assistive technology since 1982; I designed and sold braille translation software and embossers in the late eighties; and I've personally depended on assistive technology since 1991.) Based on thirty year's close attention to the development/PR/funding/purchasing/abandonment cycle for assistive technology, here's my take on the BRAIGO announcement.


DEVELOPMENT WITHOUT EXPERT ENDUSERS IS POINTLESS  ) That's why the BRAIGO can't create useful braille.

PR BECOMES DISINFORMATION ) A $350 embosser would be an amazing thing. Hundreds of well-intentioned editors and readers are willing to take the inventor's word for it. But this device is not a embosser.

EXPERTS ARE AVAILABLE on REQUEST! ) We live in a press release culture: what the company wants to say is what we hear. Or in this case, what a 12 year old (who mentions absolutely no contact with braille users) says gets broadcast.


Start from the first dot at the RNIB's Learning Braille site or pick an excellent start for adults at the Achayra firm in India. Teach more at the National Federation of the Blind's Braille is Beautiful resource for kids.

tl;dr Just because assistive technologies are tools for people with disabilities doesn't mean we must accept only good intentions. We want the best engineers working on our designs, the best marketers making them affordable, and the best politicians making them subsidized.
jesse_the_k: harbor seal's head with caption "seal of approval" (Approval)
I've read almost all that British writer Alexander Masters has published, and I seek out his work. He writes from his daily experience, but is always ready to peel away his daily assumptions and received wisdom. books movies articles )Two books, the movie, scores of articles. Take a look the next time you see Alexander Masters' name.

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Jesse the K

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